Staging

I commented the other day to a close friend that I was worried that the relative remission I’d been enjoying seemed to be over. Of course, the next question was to ask why I thought it was true. I answered that there were a few clues. First, I’m not the kind of person who bruises easily. Through my life bangs and bumps never left any lasting marks on me. But lately just about everything was giving me bruises, especially when I went to the VA hospital and had an IV placed. The penetration area turned a gruesome purple and stayed that way for two weeks. The next clue was nosebleeds. Not heavy flow bleeding, just hints of blood when I would blow my nose. Again, through my life, nose bleeding was something I didn’t experience. That is except when I tried to do a back flip while jumping on my bed, and rammed my knee into my nose as I curled for the flip. I broke my nose and that bled remarkably alot, and left myself with a deviated septum.

Aside from that, my lumbar area and my ribs have been aching terribly, I’ve been running light fevers, and I’ve felt exhausted while not being able to sleep more than three or so hours at a time. I’ve also noticed that I wind more easily. All of these are the classic symptoms of Multiple Myeloma, and the degree to which I experience these symptoms is indicative of active cancer. Part of the reason for this is that the damage to the bones produces hypercalcemia, which is too much calcium in the bloodstream as a result of the bone deterioration. As the bone material is dissolved it is taken into the bloodstream. The result is hot flashes and a general sense of fever. The cancer also produces other symptoms, like body aches, frequent unrination and constipation, along with dehydration that makes me thirsty all the time. It also produces weakness in the arms and legs with muscle aches.

When these symptoms appear in people with MM, a wide variety of tests are used to determine whether they are evidence of Multiple Myeloma or are symptomatic of some other condition. When a diagnosis of cancer, new or refractory is made, the next thing doctors will do is to stage the cancer. Staging is testing whose results indicate what considerations apply in crafting a treatment regimen. Some doctors will base a prognosis on staging, but this is a bad idea because the facts are that there is only the slightest coordination between staging and mean survival rates. Staging is determined by a number of factors that includes blood hemoglobin levels, the level of creatinine and calcium in the blood, how much bone damage has been sustained, and the level of antibody M protein in blood and urine. The last is not a factor for me because I am a non-secretor, a type of victim that shows no protein elevation. Where many Multiple Myeloma patients can use blood and urine analysis to determine their general state of involvement, I cannot. Instead my doctors have to rely on xrays, PET scans, and also bone marrow biopsies and aspirations to show the level of monoclonal cells. The collection of these results allow physicians to assign a stage to their patients affliction as stages one through three.

In my case, I was staged at three at the time of my diagnosis in February of 2008. According to my age and stage, my mean survival, if I followed the statistical averages, was approximately 19 months, with around 20% of people in my situation succumbing in a five year period. This was the reason that two separate oncologists gave me a six month prognosis on two separate and independent occasions. However, it’s depressing to know that I am fast closing on the five year window that is used to determine statistical mortality, knowing that I am likely somewhere within the unlucky fifth of Myeloma victims since I was placed there initially four years ago.

Improvements in therapy have appeared since my own chemo was abandoned nearly two years ago. Efficacy has been improved; only in the slightest of ways, but any improvement is better than none. Also the discoveries leading to reduced side effects, like subcutaneous injection versus infusion is heartening. Relapsing Multiple Myeloma is much more difficult to tame, and with a failed history of treatment it’s difficult to keep a totally positive attitude. But there’s not much sense in condemning myself until the full information is in, and the available alternatives can be weighed. Suffice to say that right about now I’m not very happy. There is little to no possibility that they symptoms I experience are a transient bug, and brief discussions with my oncologist ratify my fears. So the order of the day is to try to continue on with the things I do and just take things as they come. But I began this new year just days ago with an attitude of hope –and it is not diminished by any of this. Today is just another day, much like the ones before it and ones which will follow.

My most recent immunoglobulin treatment went well, but my results weren’t so good.

I have now got hyperviscosity (thick blood) which explains the tiredeness I have been feeling.

My Igg is 42 and my paraprotein is 31, my Haematologist said that chemotherapy usually starts when the paraprotein level reaches 30, but she is still keeping me on a watch and wait because all my other results, like x-rays and kidneys etc. are all ok.

I learnt something at my appointment, that is never ever ask a question unless you are fully prepared for the answer. i asked if and when my smouldering myeloma would turn to full blown multiple myeloma, and my Haematologist said that by the trend of my results, I will definately need chemotherapy within 5 years, scary and not the best news inthe world.

I am being re-staged in March 2009, all my bloods, urine, bone marrow, x-rays and an MRI scan will be put together to stage me, hopefully I will still be smoldering and not any worse. I am keeping busy and upbeat and my haematologist told me to keep occupied, go on holidays and excercise to avoid stress, I took that to mean, do everything while you are well enough to do it. I enjoy my life and I have far too much to do to mope around feeling sorry for myself, my new house isn’t going to decorate itself, and I wont pass my degree sitting worrying, so life well and truly goes on for me.